Goldsmiths ASD Diagnosis Project

Hi all,

This thread has now been locked.

Take care,

Anil

IntenseWorld- thank you for your kind post and also for taking part in the survey. We really appreciate it.

Just to clarify our comment regarding figures...we agree that the figures concerning the numbers of adults with ASD are probably underestimated and that there are huge numbers of undiagnosed adults. In our comment we were referring to our potential population that were eligible to take part in our survey (i.e., those who had a formal diagnosis, had the necessary verbal/cognitive abilities to take part, were able to remember their diagnosis). Sorry that this wasn't clearer. 

This is a very emotive topic and I appreciate the time people gave to take part and also those who commented on the project. We would certainly appreciate comments and feedback on the results when they feature on the website, before we submit them for formal publication, so we can represent the views of adults with ASD as accurately as possible.

Autism could be like the zero hour contracts, 100,000 turned into nearly a million ... it just depends on who it is affected and who wishes to look at the true situation, it seems 1980's big data collection programmes are still ineffectual, or are the true stats just banked somewhere in that national audit vaults, lets be honest,, AUTISM IS COST to the welfare system and society, so why would a government look to put mass resources into a lost cause. The policy is probably give them a few resources at the beginning of life and sort out the genius's and the rest can drown by lack of resources policy, whilst holding up the wide eyed picture of an autism child in the NAS brochure design for a couple of million by saatchi and saatchi as agreed at some garden party in *uckingham Palace.

Sorry, but I just can't see anything good in the UK anymore, especially LONDON !

[this post has been edited by a moderator]

@ASDDiagnosis: I think you will forgive the slightly bitter tone of some adults with ASC on this thread, many of us have had a bad experience either with diagnosis or support following diagnosis.  We also have an issue (as part of our condition) in understanding peoples' motivations.  It's appreciated that you have gone into detail to clear some points up.  I did take part in this survey BTW.

I would note that I disagree that Longman has exaggerated the figures.  I think it could be higher still.  There are a lot of undiagnosed people out there.  High-functioning people find it harder to get diagnosed as adults and therefore are not accounted for in figures.

Longman – you raise an interesting point concerning the sample size and I’d like to clarify this. First, I must note that your figures are slightly exaggerated. You have to remember that even if there are 380,000 adults with ASD in the UK, not all of these would be in a position to be able to complete this survey. For example, they may not have the necessary verbal or cognitive abilities (figures on the NAS website suggest this may apply to an average of 50% of this population, so it cuts your figure in half); participants must also have been able to remember receiving their diagnosis (which would exclude a large proportion of those diagnosed in childhood). But, you are correct in that we have only sampled a fraction of the population and it was a voluntary process (although the criteria for taking part in the study were clearly outlined). Aside from the census, there is no survey that is compulsory; it would be unethical to force people to take part.

These surveys were based on work published in 1997 by Howlin and Moore; a study that sampled almost 1300 parents. We certainly didn’t expect to sample much more than this when planning this research (this was an unusually large sample for autism research). The aim of the research is to determine some of the things that are working well regarding autism diagnosis, and some of the things that aren’t working quite so well. Our sample allows us to meet this aim and more details will be provided about the sample when we publish the results.

Finally, the responses on this thread contain a lot of unfounded assumptions about the research and I would very much like to address these. I want to stress that we have not received any consultancy fees for conducting this research. As noted on our surveys, this research is funded by a Small Grant from the British Academy. This grant covered the cost of conducting the research but the Universities involved and the investigators received no fees. We have no political agenda; this project is not linked to any of the initiatives that you have mentioned. This research stemmed from a perceived need to conduct an up-to-date survey of diagnostic experiences (following on from the last survey by Howlin and Moore, published in 1997) and to extend this to sample the views of adults with ASD and clinicians (two groups that have been overlooked in this regard).

Please also note that we will not have the ‘smallest print mention of the limitations’ – our aim is to make the research findings as clear and honest as possible and to accurately reflect the opinions of the people who generously gave their time to contribute their experiences. We agree that there is ‘too little understanding of the adult predicament’ and hope that this work goes someway to addressing this.

Maybe a couple of hundred thousand too Goldsmiths for research consultant fees will do the trick. Or how about, this is our initially findings, we need a couple of hundred thousand to carry out further research, maybe a bidding research.

What I am saying is,, you never know were the interest "lies". Let them play there games..  they will anyway.

My worry is it was presumably funded and relates to the implementation of the Autism Act/Leading Rewarding and Fulfilling Lives.

There may only be limited funds available directed at improving understanding of adult issues.

Maybe you're right and it is just a low budget survey that doesn't matter, it would ease my concerns if that's all it was.

I just don't want to find this has been a botch of the provisions coming out of the autism act that's supposed to find out more about the needs of adults. Because if that's the case I'm VERY concerned indeed.

There is way too little understanding off the adult predicament and I do not like to see the opportunity frittered away.

Long, good points you make

Maybe the research is just indicative, not hard science and will not be used for core investigations purposes. Maybe it is just a survey to be used as a political tool if the information suits there purposes..

There are 38 million adults (20 upwards) in England & Wales (I am not clear what parts of the UK are intended to be represented).

If autism affects 1% of the adult population, that's 380,000 individuals.

You sampled, using an overly long survey that deterred people from completing it, an unspecified fraction of 1000 respondents that have autism - say 380 individuals, that's a sample of 1 in a thousand adults with autism.

Wow.........

I really do not know how this passes as science. The way it was collected seems to have been voluntary and uncontrolled, or selective without adequate specification.

Yet you will publish outcomes (no doubt with the smallest print mention of the limitations) from an educational establishment supposed to have a high research profile.

With regards to the respondents, I am not in a position to give definitive answers as we are still analysing the data. However, we had an excellent response to the surveys, with over 1000 people (comprising adults with ASD, parents who have a child with ASD, and clinicians) completing the questionnaires.

Regarding the data we collected from adults with ASD, the surveys will not provide an indication of the complete adult ASD population as we could only sample those who were willing to take part that could read and understand the questions, and (for the most part) respond online. However, we do have a good, diverse range of responses from this relatively high functioning group. Any limitations concerning the sample will be noted when we present the results. We are also about to start conducting in-depth interviews with a sub-sample of our respondents, so hope this will provide us with greater insights as to what is working well and what is not working so well with regards to diagnosis.

I hope this adequately addresses your questions. 

Would more people have given time to the project if it had been more effectively communicated?

Has the number of respondents adequately represented the likely population under investigation?

I suppose, more fool me, its just another project I ignored because outwardly it seemed so badly run. But surely we can expect something well formed at the outset rather than a confusing one with a story after the event.

Hello,

I am Laura [edited by mod] - the lead researcher for this project. I wanted to post to update you on the situation with the project. 

The surveys have now closed. I apologise for the length of the survey. The estimates were based on piloting of the surveys, but several people did contact us saying that they took longer than we envisaged. We certainly did not aim to mislead anyone. Unfortunately, the more helpful and thoughtful that people were with their responses, the longer the survey seemed to take. The surveys closed earlier this year, so we are no longer in a position to amend the estimates, but we are very grateful to all those who gave their time to this project. 

The results of the project will be analysed over the coming weeks. Although the original plan was for the results to be available at the end of 2012, I have been on maternity leave for a year (Sep 2012-Sep 2013) so this was not possible. We hope that provisional results will be available for public viewing on our website by January 2014. The website is due to be updated imminently with revised estimates.

To clarify ethical issues, the study and associated information to participants was given ethical approval by the Psychology Department Research Ethics Committee at Goldsmiths. Information about publication plans and intended dates of publication will shortly be on the website. As stated in the information to participants, all data was provided anonymously to the researchers, with no information allowing answers to be traced back to the respondent. I hope this answers any questions in this regard.

Please do not hesitate to contact me [removed by mod] should you have any further questions or would like any further information.

Laura

how weird! I am going to study there this september.

I just filled it out and it took me about 45 mins

It went on forever.

Will we hear anything back from them do you think?

As I put up the link........I have sent a quick email to:

[email address no longer active]

.....just for an update on the progress and stating that the survey does indeed take longer than stated....

.....I will put up the reply....

The request for violunteers should tell you when the outcomes should be published, also what will be done with the data afterwards, regarding confidentiality. I'm a little concerned this research wasn't as ethically set out as it should be.

The web link appears to be to a real project within one of their research areas. Sometimes funding drops out or staff leave and a project fizzles out. This one claims to have first stage results available end of 2012; that date being past no updated timeline has been given. Naughty Goldsmiths. They must, in all fairness to respondents, put up to date information up, or come clean if the project is falling behind or no longer funded.

The project does give the names of the people engaged on it, including a lead researcher, whose email address is provided, and all participants have a right to contact her and ask about it. In fact they do invite you to contact her, or email a general address for the project.

This is a situation where all those who contributed have a perfect right to ask what is going on, given you gave your time to it.

The length of questionnaires is decided by the design and the issues surrounding getting an undistorted response. So there could be many questions in such a survey and forty five minutes is not untypical. They shouldn't mislead you by suggesting it would be less - another black mark Goldsmiths.

At least it seems to be a proper survey, if a bit misleading. We get too many postgrads and undergrads trying to short-cut good practice by advertising on here for respondents, which is poor ethics and gives serious research a bad name. On the whole Goldsmiths seem to be doing things right, well nearly.....

Jon said:

[quote][/quote]

When they say it takes 20-25 mins, don't believe them.

yep, your right, I found that too. I am not sure why they just don't give a more accurate estimate. It would develop better trust.

Silver100 said:

When they say it takes 20-25 mins, don't believe them.

:-) yep, your right, I found that too :-)

When they say it takes 20-25 mins, don't believe them.